MSWorld Forums - General Questions and Answershttps://www.msworld.org/forum/
enSun, 15 Sep 2019 07:00:49 GMTvBulletin60https://www.msworld.org/forum/themecrate/debutant/misc/rss.pngMSWorld Forums - General Questions and Answershttps://www.msworld.org/forum/
What is a mra?https://www.msworld.org/forum/showthread.php?145822-What-is-a-mra&goto=newpost
Fri, 13 Sep 2019 11:13:22 GMTHi,my doctor ordered a mra on my brain,what does this mean?I have about 20 lesions there.I think I had a stroke.Hi,my doctor ordered a mra on my brain,what does this mean?I have about 20 lesions there.I think I had a stroke.
]]>General Questions and AnswersCarlylehttps://www.msworld.org/forum/showthread.php?145822-What-is-a-mraTransportationhttps://www.msworld.org/forum/showthread.php?145815-Transportation&goto=newpost
Thu, 12 Sep 2019 14:52:02 GMTI just found out that my insurance offers a transportation service to doctor visits.
Has anyone ever used a service like this? Any advice?I just found out that my insurance offers a transportation service to doctor visits.

Has anyone ever used a service like this? Any advice?
]]>General Questions and Answersmartihttps://www.msworld.org/forum/showthread.php?145815-TransportationOK folks how do I adapt to the new normal of not being able to stand due to pain?https://www.msworld.org/forum/showthread.php?145814-OK-folks-how-do-I-adapt-to-the-new-normal-of-not-being-able-to-stand-due-to-pain&goto=newpost
Wed, 11 Sep 2019 23:40:37 GMTDisclaimer here: I do have fatigue insomina and extreme issues with heat over 70 degrees drats :eek:due to MS. However, I have had low back issues from 40 yrs ago when I hurt my back. I have had 5 back surgeries starting with L 3 then stopping at S...Disclaimer here: I do have fatigue insomina and extreme issues with heat over 70 degrees drats :eek:due to MS. However, I have had low back issues from 40 yrs ago when I hurt my back. I have had 5 back surgeries starting with L 3 then stopping at S 1 many yrs ago. Been on pain meds and tens unit together off and on to be able to stand at all. (meaning even getting to the bathroom right next to bedroom.) Some days not to bad others can't stand to even dress.!!!!!! On my last nerve pun intended. Three weeks ago I gave up & gave in to the extreme level then pain scale (normally never a quiter).I began going to Chriopracter, Stem Cell tomorrow and neuro surgeron in two weeks as I no of no one else to try. Chrioprater too expense cause about $5000 to $7000 one treatment and may take two not covered by insurance!

Stem Cell in am about same and again not covered by insurance. Not sure if canidate yet. May have to sit in chair on side of interstate ramp in ice vest and umbrella to afford procedure.

At this point, I have no idea if I am going to be able to get this sorted out or not. Having this issue once a week or every few weeks is VERY VERY different to having it almost daily ( in ability to even do laundry cook or change the sheets). Note: I (due to much therapy from abuse issues in childhood) learned I view myself as a human doing not a human being. I KNOW this about myself and AM "trying" to change that view however at 72 in a few days it's proving to be difficult.

I think and especially "feel" guilty asking those of you how you deal, overcome or adjust to you being in a wheelchair either partly or all the time. I have had to use cane and or be in wheelchair several times to get into therapy ( I could drive just not stand up to walk). I feel as if being in the wheelchair due to MS is somehow acceptible/reasonable/new coping is a process ( however sad and annoying that may be). However, due to the back pain it is unreasonable to ask my body and especially others (dear very reasonable accepting spouse) to believe me when I say I can't take the pain and can't do the things I once did.

How do you come to accept your new normal? I am feeling very very mad I just can't do it. I have as I said had over the years, 5 surgeries, therapy numerous times drugs and tens unit, Radio Frequency Ablation (they burn the nerves to discourage the pain pathway to brain/one scheduled next friday-they don't work every time yuk). No woe is me Eeyore style just trying to come to grips with what if anything else I could possible to. For me quality not quantity of life is the key.

How did / do you adapt without being just ticked off. Thanks to all that respond,
]]>General Questions and Answersjkforresthttps://www.msworld.org/forum/showthread.php?145814-OK-folks-how-do-I-adapt-to-the-new-normal-of-not-being-able-to-stand-due-to-painIt is time to switch meds...https://www.msworld.org/forum/showthread.php?145812-It-is-time-to-switch-meds&goto=newpost
Wed, 11 Sep 2019 20:13:33 GMTI had my MRI yesterday and just spoke with my doctor. Three new brain lesions after 4 years of no change - and these are all new lesions since April 2019.
We are meeting on Friday to discuss a medication change. We are both leaning toward...I had my MRI yesterday and just spoke with my doctor. Three new brain lesions after 4 years of no change - and these are all new lesions since April 2019.

We are meeting on Friday to discuss a medication change. We are both leaning toward Ocrevus. I investigated my medical plan and there is no need for me to try and fail on another drug before getting authorized for Ocrevus.

I am so sad, I am so angry and I cannot even think. I know it was wrong of me to think that I was going to stay status quo, but I did...I am so so stupid...

Thank you very much for listening.
]]>General Questions and AnswersBoymom123https://www.msworld.org/forum/showthread.php?145812-It-is-time-to-switch-medsGoing off Aubabiohttps://www.msworld.org/forum/showthread.php?145811-Going-off-Aubabio&goto=newpost
Wed, 11 Sep 2019 17:26:52 GMTHas anyone had diarrhea right after going off Aubagio?Has anyone had diarrhea right after going off Aubagio?
]]>General Questions and Answersgalbert58https://www.msworld.org/forum/showthread.php?145811-Going-off-AubabioNew way to assess brain?https://www.msworld.org/forum/showthread.php?145810-New-way-to-assess-brain&goto=newpost
Mon, 09 Sep 2019 21:17:07 GMTHave any of you had the newer scan that assesses how your brain is actually doing vs just looking at lesions? Is it something you think I should ask for at my next appointment? I stopped Copaxone and haven't had a relapse or new lesions. But all the recent talk about the new way of looking at MS brain health has me wondering if I should at least monitor that.
]]>General Questions and AnswersMMMMShttps://www.msworld.org/forum/showthread.php?145810-New-way-to-assess-brainAnyone tear a muscle from a spasm?https://www.msworld.org/forum/showthread.php?145809-Anyone-tear-a-muscle-from-a-spasm&goto=newpost
Sun, 08 Sep 2019 19:55:48 GMTHey All,
Of course I have spasticity and get leg and foot cramps fairly often. I also have flat feet and now in addition to foot drop on my left ankle, I have officially been told I have a contracted Achilles tendon on my left ankle and will...Hey All,

Of course I have spasticity and get leg and foot cramps fairly often. I also have flat feet and now in addition to foot drop on my left ankle, I have officially been told I have a contracted Achilles tendon on my left ankle and will have a cast put on next month to stretch it out.

Up until last Saturday, my right leg was fine, that is until I had the absolute worst calve muscle spasm you can imagine! My muscle was like a rock and it was VERY painful. It was a long time before I could hobble on it and then it was only to my recliner for the next 3 days.

I contacted my Primary Care Dr. who ordered labs and my creatine kinase and immature granulocytes are high indicating muscle damage. About this time the bruising started to show and my leg was starting to swell and this was 4 days later. As a precaution they did an ultrasound and no clots.

So now I am waiting to hear if they want to run more tests or have an answer as to why this happened, could spasticity cause a cramp bad enough to tear the muscle? Anyone ever heard of something like this happening? Needless to say I am now a hot mess trying to get around with my AFO with an insert for plantar fasciitis on my left foot and leaning on my cane hobbling with my sore right leg.

Oh Joy!
]]>General Questions and AnswersMS TOOhttps://www.msworld.org/forum/showthread.php?145809-Anyone-tear-a-muscle-from-a-spasmDiscontinuing medicationhttps://www.msworld.org/forum/showthread.php?145804-Discontinuing-medication&goto=newpost
Fri, 06 Sep 2019 13:04:00 GMTI was wondering if it is ever recommended for a patient to discontinue taking medication. After 5 years of taking Tecfidera I have not had any relapses or changes in the MRI. Before taking Tecfidera I was on Copaxone and Gilenya with long periods of...I was wondering if it is ever recommended for a patient to discontinue taking medication. After 5 years of taking Tecfidera I have not had any relapses or changes in the MRI. Before taking Tecfidera I was on Copaxone and Gilenya with long periods of no medication in between changing medications. During all of this time since 2012 I haven't had any new problems. I am now 67 and in very good health.
Any thoughts??
]]>General Questions and Answersrsingerhttps://www.msworld.org/forum/showthread.php?145804-Discontinuing-medicationWhat would you do?https://www.msworld.org/forum/showthread.php?145800-What-would-you-do&goto=newpost
Wed, 04 Sep 2019 20:33:54 GMTI was diagnosed 4 years ago with very minor symptoms - all sensory (vibrations in legs). I have been on Copaxone since that time with no issue.
However, I think I am currently having an exacerbation - more sensory symptoms, but in a place where...I was diagnosed 4 years ago with very minor symptoms - all sensory (vibrations in legs). I have been on Copaxone since that time with no issue.

However, I think I am currently having an exacerbation - more sensory symptoms, but in a place where I never had them before (numbness/tingling in my face). My doctor is being proactive and is going to have me get an MRI. She said if there is a change, we would discuss a medication change. I was all for Copaxone but if I am getting new lesions, I want to switch. Four years is a pretty good run on that med.

So, here's my question - what would you do at this point? Would you change to a more effective oral med (I am thinking Gilenya is the option I would choose), or would you go for a "big gun" like Tysabri (I don't think I am the point of considering Ocrevus)? I am just seeking your opinion, so all opinions are welcome :)
]]>General Questions and AnswersBoymom123https://www.msworld.org/forum/showthread.php?145800-What-would-you-doDORIAN, really bad spasms.https://www.msworld.org/forum/showthread.php?145798-DORIAN-really-bad-spasms&goto=newpost
Wed, 04 Sep 2019 16:35:13 GMTI had really bad spasms during hurricane, like I had with intitial MS attack. Does anyone know if if it would be stress or low barometric pressure or what? I was almost ready to go to hospital because of last issue with heat exhaustion. I have...I had really bad spasms during hurricane, like I had with intitial MS attack. Does anyone know if if it would be stress or low barometric pressure or what? I was almost ready to go to hospital because of last issue with heat exhaustion. I have really bad pressure in my ears and feel like I just had major workout and all muscles sore. Can anyone advise?
]]>General Questions and AnswersTeddy1101https://www.msworld.org/forum/showthread.php?145798-DORIAN-really-bad-spasmsTravel gel pad for pressure sores?https://www.msworld.org/forum/showthread.php?145796-Travel-gel-pad-for-pressure-sores&goto=newpost
Tue, 03 Sep 2019 02:40:34 GMTI'm taking a trip and will be renting a power chair. I travel with my own manual chair that is customized for me and has a decent seat cushion. Last year on a trip, I sat more than usual and spent a lot of time in a rental power chair. I had never experienced pressure points or sores before. One day I had to be riding in the chair for hours and after about an hour, I was in a lot of pain and when we looked, I had a very red area on my bottom. There wasn't much we could do until we arrived at our destination hours later. My husband tried to adjust my position by propping towels in the chair but it was little help. What can I take with me that wouldn't take up too much room and I could use on different types of seats? I'll also know to check for pressure points daily so it never gets that bad again. This was a new experience for me and one that I don't want to repeat! Thanks for any ideas.
]]>General Questions and Answersnkh18https://www.msworld.org/forum/showthread.php?145796-Travel-gel-pad-for-pressure-soresSite was down and missing posts!https://www.msworld.org/forum/showthread.php?145792-Site-was-down-and-missing-posts!&goto=newpost
Mon, 02 Sep 2019 01:50:40 GMTOur site was down for about 2 days due to some technical problems this week. The board moderators have no indication what the initial problem was, but we have noticed that there are a few posts and threads that are now missing from August 26th until...Our site was down for about 2 days due to some technical problems this week. The board moderators have no indication what the initial problem was, but we have noticed that there are a few posts and threads that are now missing from August 26th until today (Sept 1st).

We are truly sorry for this inconvenience.:( If you notice that your post is missing, please try to post again. Your stories, experiences, thoughts are important for all of us.

Again, we are terribly sorry.
]]>General Questions and AnswersSeashahttps://www.msworld.org/forum/showthread.php?145792-Site-was-down-and-missing-posts!Difficulties Finding Progessive MS Treatmenthttps://www.msworld.org/forum/showthread.php?145786-Difficulties-Finding-Progessive-MS-Treatment&goto=newpost
Fri, 23 Aug 2019 12:29:59 GMTNew drugs haven’t brought about any significant improvement in the treatment of progressive multiple sclerosis. For a variety of reasons.
Medications currently used to treat multiple sclerosis (MS) can merely reduce relapses during the initial...New drugs haven’t brought about any significant improvement in the treatment of progressive multiple sclerosis. For a variety of reasons.

Medications currently used to treat multiple sclerosis (MS) can merely reduce relapses during the initial relapsing-remitting phase. Many patients, however, develop progressive MS at a later stage, with disability becoming progressively worse. This type cannot be sufficiently treated at yet. Possible causes why an effective therapy for progressive MS is still lacking have been compiled by an international research team in a review article in the journal “Nature Reviews Drug Discovery” from 9 August 2019.

[url]https://news.rub.de/english/press-releases/2019-08-20-medicine-how-improve-multiple-sclerosis-therapy[/url]
]]>General Questions and AnswersKoKohttps://www.msworld.org/forum/showthread.php?145786-Difficulties-Finding-Progessive-MS-TreatmentAny tricks to handling panic attacks?https://www.msworld.org/forum/showthread.php?145785-Any-tricks-to-handling-panic-attacks&goto=newpost
Thu, 22 Aug 2019 22:04:08 GMTI think somewhere along the line we agreed that anxiety can be a MS problem.
Yesterday I was supposed to have a kidney CT scan. My neighbor was driving me to the city and I started feeling lousy. By the time we got there I was in a full blown...I think somewhere along the line we agreed that anxiety can be a MS problem.

Yesterday I was supposed to have a kidney CT scan. My neighbor was driving me to the city and I started feeling lousy. By the time we got there I was in a full blown panic attack and feeling absolutely awful. I tried to keep it to myself for my neighbor's sake.

The initial registration went smooth and I was called very quickly. I told the guy what was going on because I wasn't so sure I wanted to go through with it by that time. He called in a nurse who called in another one. Guess I was very pale by then. They thought I would be better off cancelling and talking with my doctor before I set up a new appointment. I batted it back and forth with myself and them until I finally left without having the test. Shortly after we left the clinic I started feeling better. By the time I got home my blood pressure was good. I still have a little bit of that funny feeling... even up into today. But as you all know, I am always exhausted and feel a lot of anxiety. This was the worst attack I have ever had. Felt like I was flying off into space. I had 2 weeks to think about this test and to worry about it. Not good.

Anyway, since I can't get my doctor to order any meds, I'm trying to figure out what else I can try to control this anxiety. I'm planning to see a sleep doctor as soon as I can arrange it and am hopeful she will have better options for me. I've always said that emotional problems had to "hurt" more than the physical stuff. True enough.

Does anyone here get these panic attacks and do you have any suggestions???

Thanks.
]]>General Questions and Answersmartihttps://www.msworld.org/forum/showthread.php?145785-Any-tricks-to-handling-panic-attacksAggressive Early Treatmenthttps://www.msworld.org/forum/showthread.php?145784-Aggressive-Early-Treatment&goto=newpost
Thu, 22 Aug 2019 20:32:49 GMTWhy MS Patients May Benefit from Aggressive Early Treatment
Research shows that treatment at the first sign of disease may be best for most patients with multiple sclerosis. Our experts explain why and describe some exceptions.
The article is...Why MS Patients May Benefit from Aggressive Early Treatment

Research shows that treatment at the first sign of disease may be best for most patients with multiple sclerosis. Our experts explain why and describe some exceptions.